DNA profiles and other genetic records contain particularly sensitive personal information that can impact employment decisions, insurance availability, and even criminal justice outcomes. Many states have passed laws governing the use of genetic data, but most of these laws do not provide meaningful safeguards or limit the use of genetic information. EPIC has litigated and advocated to establish stronger privacy safeguards for genetic information.
Alaska Genetic Privacy Act
The Alaska Genetic Privacy Act S18.13.010-100 is a comprehensive genetic privacy law. It strictly limits genetic testing as well as access to, retention and disclosure of genetic data without the "informed and written consent" of the individual. The law also recognizes that both the genetic information and the DNA samples collected are the property of the individual, and provides for both civil and criminal penalties for violations genetic privacy rights.
What's Missing from Alaska's Law?
While Alaska's Genetic Privacy Act limits genetic testing, it does contain a blanket exception for DNA samples collected "for a law enforcement purpose" and pursuant to the state DNA identification system for criminal justice. Additionally, it does not give individuals a right to their data.
Nevada's Genetic Privacy Law
Nevada has a comprehensive genetic privacy law. The law (NRS 629.101 et seq.) prohibits the collection, retention, or disclosure of genetic information without obtaining consent from the individual. Law enforcement may obtain genetic information with a court order. The law provides the data subject the right to inspect and obtain her genetic records, requires entities holding genetic information to destroy that information if consent is withdrawn, and provides criminal penalties and a private right of action for violations of the law.
- EPIC: Genetic Privacy
- EPIC: Maryland v. King
- National Conference of State Legislatures (NCSL): DNA Arrestee Laws.
- FTC: Direct-to-Consumer Genetic Tests
- FTC: DNA Test Kits: Consider the Privacy Implications (2017)
- NIH: Privacy in Genomics
- NCSL: Genetic Privacy Laws (last updated January 2008).
- Presidential Commission for the Study of Bioethical Issues, Privacy and Progress in Whole Genome Sequencing (Oct. 2012).
- Emily C. Barbour, Cong. Research Serv., RL 41847, DNA Databanking: Selected Fourth Amendment Issues and Analysis (2011)